Maine has struggled for years to find funding for people with developmental disabilities who qualify for services under the state's Medicaid program. Maine's spending for these services — including in-home and work support — is third highest in the nation. The state is looking for ways to provide more in-home services for less.

KATE COLLINS | BDN

After preparing and serving lunch at the Salvation Army in Bangor, Kenneth Pelkey (right) of Howland and Herbert Skidgel of Bangor sit down to enjoy their own lunch on Wednesday, Jan. 26, 2011. Pelkey and Skidgel are developmentally disabled and participants in the Downeast Horizons Bangor Day Program. "The more you help people, the more they feel good inside," said Skidgel of the volunteer work Downeast Horizon clients do on a monthly basis by planning, serving and cleaning up at The Salvation Army. Buy Photo

As State House debate intensified on expanding Medicaid in recent months, Republicans opposed to the initiative, including Gov. Paul LePage, argued that Maine shouldn’t extend health coverage to 50,000 nondisabled adults without children while elderly people and people with disabilities remain on waitlists for community and home support services.

“Today, they ask you to stop sending them to the back of the line behind others who, yes, may be poor, but they are able-bodied and have options and choices that the individuals I’m speaking for today do not have,” Rep. Deborah Sanderson, R-Chelsea, said Wednesday on the House floor.

If the state had funds to eliminate waitlists for adults with autism and intellectual disabilities, the federal Medicaid program — which pays 62 percent of Maine’s costs — wouldn’t necessarily chip in. Medicaid limits the number of people Maine can serve through the programs that help those with disabilities and autism. The state will reach those limits, but still have waitlists, even after using additional funds provided in the new, two-year state budget passed by lawmakers Thursday.

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Democrats have said they share Republicans’ desire to fund services for those on waiting lists but the issue is separate from Medicaid expansion.

“Seventy thousand people will go uninsured if we do not act” on Medicaid expansion, said Rep. Jeff McCabe of Skowhegan, assistant Democratic House leader. “These federal dollars are coming to us specifically for an opportunity. We must accept these dollars, and we must continue to work together to address this waiting list.”

In early June, the waitlist numbers totaled 4,017, according to the state Department of Health and Human Services. The number, however, is fluid and inexact as new people become eligible for those services and some are taken off waitlists as they’re provided services.

There’s also duplication in the numbers as many are on waitlists for multiple services. Plus, many of those 4,000 are receiving one category of service while they wait for another.

“It’s almost problem compiled on problem for families and individuals,” said Nancy Cronin, executive director of the Maine Developmental Disabilities Council. “These are real people with real value who need a little bit of support to be included in the community and be valued members. Without the support, there are going to be problems, really big problems.”

Long-term care at home

Those who have been placed on waitlists for services require some type of long-term care because they’re growing old, have autism, or have physical or intellectual disabilities that prevent them from living independently.

The services include some paid for solely by the state — including meals and in-home health services that allow elderly people to remain at home — and others by Medicaid.

As lawmakers have discussed the waitlists, they’ve homed in on two Medicaid programs that serve adults with autism and intellectual disabilities. DHHS has secured special waivers, known as Section 21 and Section 29 waivers, from the federal government to spend Medicaid funds serving these people in their homes and communities rather than at institutions.

“There’s a facility bias” in Medicaid, said Ricker Hamilton, director of the Office of Aging and Disability Services at DHHS. Through the waiver program, “you’re waiving your right to a facility to receive those services in the community. That’s our vision, is to serve more of us in the community and not in the facility.”

The Section 21 waiver provides the highest level of support to adults with intellectual disabilities who require housing in group homes or other settings, near-constant attention to keep them safe, and assistance so they can work in their communities.

The Section 29 waiver offers in-home services and work support for those with the same disabilities who require less intensive support.

Earlier this month, according to DHHS, 804 adults were on the waitlist for the Section 21 waiver. More than half of them, 462, were receiving Section 29 services as they waited for the more intensive support. Some 486 adults were on a waitlist for Section 29 services. While they’re waiting, they receive health coverage and case management help through MaineCare, Maine’s version of Medicaid.

“Without the waiver slot, likely they are going to regress,” said Cronin, of the Developmental Disabilities Council. “They are going to be staying at home. … The stress will be on the family and the individual. That’s not good for our society.”

The state budget lawmakers passed Thursday provides $7 million over the next two years to shrink the Section 21 waiting list by 75 people and $2 million to reduce the Section 29 waiting list by 130, according to Hamilton.

But even if the state had enough funds to eliminate the Section 21 and 29 waitlists, it couldn’t. While Medicaid entitles anyone who qualifies to specialized facility care, the federal program limits the number of people Maine can serve at home through its waiver programs. Maine’s limits are 2,935 for Section 21 and 1,450 for Section 29. The state will reach those limits with the additional funds provided by the budget and still have waitlists.

Expanding Medicaid under the federal Affordable Care Act would provide health insurance to about 50,000 nondisabled adults without children whose incomes are below 133 percent of the federal poverty level, or $20,628 for a two-person household. The expansion would prevent about 25,000 childless adults and parents from losing their coverage starting Jan. 1, 2014.

The expansion wouldn’t directly provide services for those with disabilities on waitlists, but it would cover some adults with autism who are higher-functioning than those waiting for Section 21 and 29 services, said Cronin. The health coverage could prevent those adults from needing more intensive — and expensive — support services in the future, she said.

More autism, more services

Between 2000 and 2012, the number of people in Maine with autism grew 737 percent, according to state figures. Last year, the state recorded 5,381 people statewide with autism spectrum disorder, up from 643 in 2000.

That growth is a sign of the services those with autism will require — and the state will need to provide — as they become adults and lose the support they received through the public school system. That transition is happening quickly. In 2009, 25 percent of those with autism were 21 and older. Three years later, that figure was up to 40 percent.

“Those folks are just cresting and moving from the children’s services side to adult services,” Cronin said. “Some of these folks are in group homes now as children, and they don’t actually know what’s going to happen when they turn 21.”

Maine is one of 11 states where sending adults with intellectual disabilities to an institution is no longer an option. Maine’s last institution, Pineland Hospital and Training Center in New Gloucester, closed in 1996. The state started transitioning away from serving people in institutions in the 1980s.

That means Maine needs to find a way to serve people with disabilities in their communities. And it’s expensive, though less expensive than care at a specialized facility. According to Hamilton, it costs about $102,000 annually per person to provide services under the Section 21 waiver; the average cost is $22,000 for Section 29 services.

And Maine exceeds the national average when it comes to spending on those waiver programs. In 2008, according to AARP, Maine ranked third nationally in its average per-person spending on Section 21 and 29 services. Part of that high rank, Cronin said, is because Maine’s Section 21 numbers account for high-need adults other states would send to institutions.

That doesn’t mean there aren’t ways to reduce costs, said Hamilton. Some of Maine’s high spending is because of its higher-than-average reliance on group homes, he said. In addition, DHHS is implementing a new, standardized system, known as the Supports Intensity Scale, to better determine exactly what services people with intellectual disabilities need and don’t need.

That could make budgeting more predictable and cut costs, said Cronin, whose group supports the change.

Changes are also afoot at the federal level to transition Medicaid away from its preference for facilities. The federal government earlier this week awarded Maine a $21 million grant through the Affordable Care Act that will allow the state to spend more of its Medicaid funds on in-home, rather than institutional, care for the elderly and disabled.